Re: Current Concepts in Peripheral Neuropathies

[Guest guest]

Ray

Some of us have pain, some don't and yes some Neurologists do say CMT does not

cause pain but there again how many of them have it.

If I were you I would rejoice and don't worry about pain in the future it may or

may not happen but you don't need the hassle now.

Love

Sue

The important thing is never to stop questioning.

Website www.horder-mason.freeserve.co.uk

Freelance Writer and CMTer

" I Thank God for my handicaps, for through them, I have found myself, my work,

and my God. " - Helen Keller

----- Original Message -----

From: Ray

' '

Sent: Friday, January 04, 2002 9:09 AM

Subject: RE: [] Current Concepts in Peripheral Neuropathies

Gretchen and others,

I just took a look at this article and I noted the following quote re CMT:

" Pain is a distinctly unusual symptom and its presence argues against a

hereditary PN. "

I have been diagnosed with CMT 2, but I have no pain (good news, obviously),

and I've often been curious why so many posts talked of pain when I was also

advised of the above by my neurologist.

So, is the above correct? Or should I worry about pain that will come...!

Ray

-----Original Message-----

From: Gretchen Glick

ers at groups

Sent: 1/1/2002 7:17 AM

Subject: [] Current Concepts in Peripheral Neuropathies

August 2002 Current Concepts in Diagnosis and Treatment of Peripheral

Neuropathies, mentions CMT. ~ G

http://www.dcmsonline.org/jax-medicine/august2000/neuropathies.htm

[Guest guest]

Gretchen and others,

I just took a look at this article and I noted the following quote re CMT:

" Pain is a distinctly unusual symptom and its presence argues against a

hereditary PN. "

I have been diagnosed with CMT 2, but I have no pain (good news, obviously),

and I've often been curious why so many posts talked of pain when I was also

advised of the above by my neurologist.

So, is the above correct? Or should I worry about pain that will come...!

Ray

-----Original Message-----

From: Gretchen Glick

ers at groups

Sent: 1/1/2002 7:17 AM

Subject: [] Current Concepts in Peripheral Neuropathies

August 2002 Current Concepts in Diagnosis and Treatment of Peripheral

Neuropathies, mentions CMT. ~ G

http://www.dcmsonline.org/jax-medicine/august2000/neuropathies.htm

[Guest guest]

In a message dated 1/4/02 12:13:10 AM, @... writes:

<< So, is the above correct? Or should I worry about pain that will come...!

>>

Some CMTers, myself included, have pain - real wrenching pain. Other CMTers

do not. It has been documented that some CMTers do have pain, either nerve

pain or structual, such as from how they walk, or both.

The pain is real. My neurologist knows that some of his CMT patients have

real pain and others don't. Neither he nor my GP doubt me when I describe my

pain. They ask me if there is anything they can do to help. I've always said

" No thanks, " but now I'm wavering.

My pain causes involuntary gasps and groans, and it causes me to jerk

violently at times through each day. It rips me out of whatever I'm doing, no

matter how much I might be concentrating and lost in thought. My pain is REAL.

Only ignorant people believe CMT does not cause pain in some people. Note I

said SOME. Other CMTers never have pain from it. Old books say CMT doesn't

cause pain.

Our pain is often very much like diabetic pain. Surely your neuro recognizes

that pain.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list-uids

9862301 & doptAbstract

Neuropathic pain in Charcot-Marie-Tooth disease.

Arch Phys Med Rehabil 1998 Dec;79(12):1560-4 Related Articles, Books, LinkOut

Neuropathic pain in Charcot-Marie-Tooth disease.

GT, Jensen MP, Galer BS, Kraft GH, Crabtree LD, Beardsley RM, Abresch

RT, Bird TD

Department of Rehabilitation Medicine, University of Washington School of

Medicine, Seattle, USA.

OBJECTIVES: To determine the frequency and extent to which subjects with

Charcot-Marie-Tooth (CMT) disease report pain and to compare qualities of

pain in CMT to other painful neuropathic conditions. STUDY DESIGN:

Descriptive, nonexperimental survey, using a previously validated measurement

tool, the Neuropathic Pain Scale (NPS). PARTICIPANTS: Participants were

recruited from the membership roster of a worldwide CMT support organization.

MAIN OUTCOME MEASURES: NPS pain descriptors reported in CMT were compared

with those reported by subjects with postherpetic neuralgia (PHN), complex

regional pain syndrome, type 1 (CRPS-1), also known as reflex sympathetic

dystrophy, diabetic neuropathy (DN), and peripheral nerve injury (PNI).

RESULTS: Of 617 CMT subjects (40% response rate), 440 (71%) reported pain.

with the most severe pain sites noted as low back (70%), knees (53%), ankles

(50%), toes (46%), and feet (44%). Of this group, 171 (39%) reported

interruption of activities of daily living by pain; 168 (38%) used

non-narcotic pain medication and 113 (23%) used narcotics and/or

benzodiazepines for pain. The use of pain description was similar for CMT,

PHN, CRPS-1, DN, and PNI in terms of intensity and the descriptors hot, dull,

and deep. CONCLUSIONS: Neuropathic pain is a significant problem for many

people with CMT.

The frequency and intensity of pain reported in CMT is comparable in many

ways to PHN, CRPS-1, DN. and PNI. Further studies are needed to examine

possible pain generators and pharmacologic and rehabilitative modalities to

treat pain in CMT.

PMID: 9862301, UI: 99077117

=======================

http://www.spine-health.com/topics/cd/neuropain/neuropain03.html

The spinal cord is the main part of the body's central nervous system that

conveys signals from the brain to the nerves throughout the body. Nerves

coming from and leading to all parts of the body enter and exit the spinal

cord along its entire length.

There are 31 pairs of spinal nerves that exit the spinal cord through

openings between the vertebrae. The point at which the nerve exits the spinal

cord is called the nerve root, and where it branches out into many smaller

nerves that control different parts of the body is called peripheral nerves.

For example, a nerve that exits the lower back has peripheral branches that

extend all the way down to the toes. Peripheral nerves comprise the

peripheral nervous system.

The peripheral nerves include both motor nerves and sensory nerves:

a.. Sensory nerves are nerves that receive sensory stimuli, such as how

something feels and if it is painful. They are made up of nerve fibers,

called sensory fibers (mechanoreceptor fibers sense body movement and

pressure placed against the body, and nociceptor fibers sense tissue injury).

b.. Motor nerves lead to the muscles and stimulate movement. They are made

up of nerve fibers called motor fibers.

While is has not been firmly established, it is thought that injury to any of

the above types of nerve tissue can be a possible cause neuropathic pain.

The part of the nerve cell that is damaged by a neuropathy is the axon (the

inner information pathway of the nerve cell) and/or its myelin covering (the

fatty outer sheath that protects the nerve cell and assists in conveying

information throughout the nervous system).

When neuropathy occurs by damage to the above structures, neuropathic pain is

sustained by abnormal processing of sensory input by the peripheral nervous

system and the central nervous system.

By: Ralph F. Rashbaum, MD

June 27, 2001

[Guest guest]

In a message dated 1/4/02 3:13:20 AM Eastern Standard Time, @...

writes:

> So, is the above correct? Or should I worry about pain that will come...!

>

Hello the House,

Hi Ray, I have CMT 1A,and I am 70yrs.young. I consider myself one of the

lucky CMTers in that I have not had some of the crippling disabilities that

can come with CMT. One being the pain that is so often mention here. I do

have an occasional pain that comes on every once in a while instantaneously

and leaves just as quick. It might be in the leg, wrist, arm, where ever.

But in my 70yrs. I have not had pain per se, (extended pain) As been so often

said here, CMT effects us all differently.

E

[Guest guest]

The pain I have is when I am forced to move the area

that is affected in my hands. When I bend the joints

of my thumb and index finger it pull on the ligament

and tendons where I think the nerves are attached. So

far the only pain I have in my feet are from my

falling arches, which means the bones are going into a

position that is not normal for them, thus they

PROTEST OVER MUCH

Stiffness is my biggest complaint. Those of you with

good hands should try to tie your shoes with out using

your thumb.

Susie

--- KathleenLS@... wrote:

> In a message dated 1/4/02 12:13:10 AM,

> @... writes:

>

> << So, is the above correct? Or should I worry

> about pain that will come...!

> >>

>

> Some CMTers, myself included, have pain - real

> wrenching pain. Other CMTers

> do not. It has been documented that some CMTers do

> have pain, either nerve

> pain or structual, such as from how they walk, or

> both.

>

> The pain is real. My neurologist knows that some of

> his CMT patients have

> real pain and others don't. Neither he nor my GP

> doubt me when I describe my

> pain. They ask me if there is anything they can do

> to help. I've always said

> " No thanks, " but now I'm wavering.

>

> My pain causes involuntary gasps and groans, and it

> causes me to jerk

> violently at times through each day. It rips me out

> of whatever I'm doing, no

> matter how much I might be concentrating and lost in

> thought. My pain is REAL.

>

> Only ignorant people believe CMT does not cause pain

> in some people. Note I

> said SOME. Other CMTers never have pain from it. Old

> books say CMT doesn't

> cause pain.

>

> Our pain is often very much like diabetic pain.

> Surely your neuro recognizes

> that pain.

>

>

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list-uids

>

> 9862301 & doptAbstract

> Neuropathic pain in Charcot-Marie-Tooth disease.

>

> Arch Phys Med Rehabil 1998 Dec;79(12):1560-4 Related

> Articles, Books, LinkOut

>

> Neuropathic pain in Charcot-Marie-Tooth disease.

>

> GT, Jensen MP, Galer BS, Kraft GH, Crabtree

> LD, Beardsley RM, Abresch

> RT, Bird TD

>

> Department of Rehabilitation Medicine, University of

> Washington School of

> Medicine, Seattle, USA.

>

> OBJECTIVES: To determine the frequency and extent to

> which subjects with

> Charcot-Marie-Tooth (CMT) disease report pain and to

> compare qualities of

> pain in CMT to other painful neuropathic conditions.

> STUDY DESIGN:

> Descriptive, nonexperimental survey, using a

> previously validated measurement

> tool, the Neuropathic Pain Scale (NPS).

> PARTICIPANTS: Participants were

> recruited from the membership roster of a worldwide

> CMT support organization.

> MAIN OUTCOME MEASURES: NPS pain descriptors reported

> in CMT were compared

> with those reported by subjects with postherpetic

> neuralgia (PHN), complex

> regional pain syndrome, type 1 (CRPS-1), also known

> as reflex sympathetic

> dystrophy, diabetic neuropathy (DN), and peripheral

> nerve injury (PNI).

> RESULTS: Of 617 CMT subjects (40% response rate),

> 440 (71%) reported pain.

> with the most severe pain sites noted as low back

> (70%), knees (53%), ankles

> (50%), toes (46%), and feet (44%). Of this group,

> 171 (39%) reported

> interruption of activities of daily living by pain;

> 168 (38%) used

> non-narcotic pain medication and 113 (23%) used

> narcotics and/or

> benzodiazepines for pain. The use of pain

> description was similar for CMT,

> PHN, CRPS-1, DN, and PNI in terms of intensity and

> the descriptors hot, dull,

> and deep. CONCLUSIONS: Neuropathic pain is a

> significant problem for many

> people with CMT.

>

> The frequency and intensity of pain reported in CMT

> is comparable in many

> ways to PHN, CRPS-1, DN. and PNI. Further studies

> are needed to examine

> possible pain generators and pharmacologic and

> rehabilitative modalities to

> treat pain in CMT.

>

> PMID: 9862301, UI: 99077117

>

> =======================

>

http://www.spine-health.com/topics/cd/neuropain/neuropain03.html

>

> The spinal cord is the main part of the body's

> central nervous system that

> conveys signals from the brain to the nerves

> throughout the body. Nerves

> coming from and leading to all parts of the body

> enter and exit the spinal

> cord along its entire length.

>

> There are 31 pairs of spinal nerves that exit the

> spinal cord through

> openings between the vertebrae. The point at which

> the nerve exits the spinal

> cord is called the nerve root, and where it branches

> out into many smaller

> nerves that control different parts of the body is

> called peripheral nerves.

> For example, a nerve that exits the lower back has

> peripheral branches that

> extend all the way down to the toes. Peripheral

> nerves comprise the

> peripheral nervous system.

>

> The peripheral nerves include both motor nerves and

> sensory nerves:

>

> a.. Sensory nerves are nerves that receive sensory

> stimuli, such as how

> something feels and if it is painful. They are made

> up of nerve fibers,

> called sensory fibers (mechanoreceptor fibers sense

> body movement and

> pressure placed against the body, and nociceptor

> fibers sense tissue injury).

>

> b.. Motor nerves lead to the muscles and stimulate

> movement. They are made

> up of nerve fibers called motor fibers.

>

> While is has not been firmly established, it is

> thought that injury to any of

> the above types of nerve tissue can be a possible

> cause neuropathic pain.

>

> The part of the nerve cell that is damaged by a

> neuropathy is the axon (the

> inner information pathway of the nerve cell) and/or

> its myelin covering (the

> fatty outer sheath that protects the nerve cell and

> assists in conveying

> information throughout the nervous system).

>

> When neuropathy occurs by damage to the above

> structures, neuropathic pain is

> sustained by abnormal processing of sensory input by

> the peripheral nervous

> system and the central nervous system.

>

> By: Ralph F. Rashbaum, MD

> June 27, 2001

>

>

>

__________________________________________________